Woman on escalator wearing a face mask; she's holding a cell phone in one hand and her suitcase handle in the other

The Arc Responds to New CDC Mask Guidance

/in , /by The Arc

Washington, DC – The Arc is disappointed by the decision by the Centers for Disease Control and Prevention (CDC) on Friday to revise masking guidelines for the United States. The new set of criteria deprioritizes the importance of case counts, resulting in approximately 70% of United States counties shifting status overnight. This does not mean that those counties do not still have high case counts or that people in those communities who are immunocompromised and at higher risk of contracting and being harmed by COVID-19 should not still protect themselves. The CDC acknowledges as much in their new guidance, detailing different rules for people who are immunocompromised.

“People with intellectual and developmental disabilities are at extremely high risk of contracting and dying from COVID-19 – having an intellectual disability was the strongest independent risk factor for presenting with the diagnosis and the strongest independent risk factor other than age for COVID-19 mortality,” said Peter Berns, The Arc’s CEO. Even though recent variants have been milder in some circumstances, there is no indication that they are still not a serious risk for people with IDD.

“Since the beginning of the pandemic, we have had to push back on the idea that people with IDD are second class citizens who should be deprioritized when rationing care or that the providers who serve them are not essential workers. This change to the masking guidance specifically lays out a completely separate set of rules for people with disabilities, recognizing that they are still at risk, but not asking the general public to continue to take protective measures to help reduce their risks. Access to high quality masks; accessible, affordable and available testing; monoclonal antibodies; and other mitigation options are still – two years into this crisis – not widely available and accessible to people with disabilities. Placing the burden of protecting themselves solely on the high risk individuals without these basic tools in place is unacceptable—even more so with case counts still high and non-universal access to vaccines.

“Masking indoors not only protects the individual wearing the mask, but everyone around them by reducing transmission of the virus. For people who are high risk, the amount of virus in their community is an incredibly important data point. This is especially the case for individuals with disabilities who might not be able to mask themselves and so rely on others. And it also crucial for children with complex medical needs under 5 who cannot be vaccinated right now and for children with disabilities in school who are at high risk.

“Like everyone else, people with disabilities and their loved ones are very tired of the pandemic and want to go back to something like normal. But we are still waiting for vaccines to be universally available and for case counts to drop to protect immunocompromised people. 2,797 people died of the virus on Friday when the guidance was announced and we have almost reached one million deaths, including a disproportionate number of people with IDD. We must ensure that our public health policies focus on and reflect the needs of people with disabilities, not simply tell them to fend for themselves or stay home.

“As this abrupt policy change disregards the needs of people with disabilities begins to be implemented, we ask everyone to think about others in their neighborhoods, in their communities, in that moment when questioning whether it is necessary to put on a mask. Many people will benefit from widespread masking, until things improve for everyone.”

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

a group of people of varying ages walk on a field with sunset in the background. They all wear blue shirts that say "volunteer".

Combating Hunger through Inclusive Volunteering for MLK Day 2022

/in /by Pam Katz

Food insecurity is a significant problem across the United States and has been magnified by the COVID-19 pandemic. While food banks typically provide for more than 37 million Americans each year, in 2020 this number skyrocketed to more than 60 million.

Against this backdrop and for the sixth year in a row, The Arc teamed up with local chapters of The Arc and other community organizations to lead MLK Day of Service events throughout the weekend. Through a grant from AmeriCorps, The Arc and its partners designed inclusive volunteering initiatives that helped reduce food insecurity in their own backyards. These projects also served as a living testament to the words of Dr. King “Everyone can be great because everyone can serve” by demonstrating that volunteers with disabilities are capable and eager to serve their communities alongside volunteers without disabilities.

The 2022 MLK grantees include AHRC Nassau, AHRC NYC, Ridge Area Arc, STAR, Inc., The Arc Harrisonburg and Rockingham, The Arc Muskegon, The Arc Nature Coast, The Arc of South Carolina, The Arc of the Quad Cities Area, The Arc Oklahoma (TARC), UCP Seguin, and Youth Impact.

So far, these dedicated organizations tackled hunger in a variety of ways including:

  • Partnering with local professional chefs to host online cooking classes for individuals with disabilities
  • Donating goods to local food kitchens
  • Assembling boxed meals and backpacks for school children
  • Executing drive-through and mobile food truck food drives
  • Delivering meals to home-bound seniors

The Arc has made tremendous strides in the fight against hunger in communities across the country. Last year, an army of over 1,000 volunteers donated close to 12,000 hours of their time to assure 26,300 of their fellow citizens had nourishing food on the table. This year we are striving to make an even bigger impact!

For these organizations, MLK Day is only the beginning of their efforts to eliminate hunger in their communities. These grantees have now turned their attention to implementing additional service events in the coming months that will continue to collect and distribute even more food. Not only do these volunteer opportunities strengthen communities, they also demonstrate the value in volunteering all year long, not just on MLK Day. In an effort to create even more year-round volunteer opportunities, The Arc is simultaneously leading another AmeriCorps grant, the September 11th National Day of Service and Remembrance, dedicated to emergency preparedness and helping communities be better prepared in case of disaster.

Want to join us? You can search and sign up for volunteering events in your area here.

The Arc logo

Federal Support Can Seed Big Improvements in Mobile Response

/in , /by Pam Katz

By Whitney Bunts & Carlean Ponder

At the end of December 2021, the Centers for Medicare and Medicaid Services (CMS) released guidance on the structure and implementation process for community-based mobile crisis intervention services, which respond to mental health crises. The guidance is an excellent rubric for states to follow when beginning to implement safe, accessible, equitable, and police-free mobile response services in anticipation of the launch in July 2022 of 988, the national suicide and mental health crisis number. 

The CMS guidance is a product of the American Rescue Plan Act (ARPA). As part of ARPA, Congress created an 85 percent Federal Medicaid Assistance Percentage (FMAP) for mobile response services. This means that the federal government will cover 85 percent of the cost of states’ mobile response services, with the states responsible for the remaining 15 percent. The FMAP funding is a 3- year federal match that will start in April 2022 and can be used within a 5-year time span. Additionally, ARPA awarded $15 million in planning grants to help 20 states build a mobile response infrastructure.

The guidance outlines best practices and specifies allowable uses for mobile response services interventions, such as:

  • Encouraging staffing structures that don’t rely on law enforcement,
  • Adding peer and family support specialists as part of mobile response teams,
  • Ensuring mobile response covers people with substance use disorders,
  • Recommending partnerships with community-based organizations, pediatricians, and schools, and
  • Providing an enhanced administrative match for some Medicaid agency costs if they implement text and chat mental health services.

The full text of the guidance provides many additional details and best practices, but the five listed above will be especially beneficial to the implementation and development of youth mobile response services. The combination of community crisis care, the expansion of mobile crisis services, and the implementation of 988 will be key strategies for advancing the safety of youth, especially among youth with disabilities, as part of a holistic approach to behavioral challenges in school settings. Studies have consistently shown that students with disabilities, particularly Black students with disabilities, are disproportionately disciplined for demonstrating behaviors described as “challenging.”

According to a 2018 Government Accountability Office report, Black students accounted for 15.5 percent of all public school students but represented 39 percent of those suspended from school. Law enforcement involvement also disproportionately affects students with disabilities, especially Black students. According to data from the U.S. Dept of Education, during the 2015-2016 school year, students with disabilities represented 12 percent of the overall student enrollment and 28 percent of students referred to law enforcement or arrested. Additionally, the 2015-16 data showed Black students represented 15 percent of the total student enrollment, and 31 percent of students who were referred to law enforcement or arrested – a 16 percentage point disparity.

In one incident captured by a viral video, police were called to apprehend an upset 5-year-old Black child who left school premises. Officers placed the child in handcuffs, returned him to the school, and berated him for crying and kicking. These types of interactions between students and the police are common, and they often leave youth traumatized and distrustful. The CMS guidance, if robustly implemented by localities and with an emphasis on developing school partnerships, can help deter harmful punitive actions and provide an alternative to law enforcement referrals.

As the federal government and states work together to support new crisis services such as the 988 national mental health crisis hotline, mobile crisis units, and respite centers, it is critical to implement these best practices in a manner that does not replicate carceral systems. While the goal is to eliminate law enforcement involvement with youth in a mental health crisis, we do not want to shuttle youth from one carceral system (detention/court involvement) to another, such as forced treatment in mental health facilities. As communities plan their crisis response systems, it is vital that stakeholders, including state and local agencies, ensure youth and youth with disabilities are included in all conversations.

Overall, this guidance is a big win in the crisis and 988 advocacy community. But local, state, and federal policymakers, agency officials, and program leaders need to do more to explicitly address the mental health crisis of young people and other special populations. Locally, schools need to collaborate and partner with mobile response teams to better meet the needs of youth, particularly Black and brown youth, and youth with disabilities. State legislators and officials must recommend that their state departments of education use funding from ARPA to support and sustain mobile response teams in schools. Federally, Congress should prioritize police-free mobile response services for youth through the FY22 and FY23 budgets.

Whitney Bunts is a policy analyst on the Youth Policy team at CLASP. Carlean Ponder is the Director of Disability Rights and Housing Policy at The Arc and she is a part of CLASP’s Youth Mobile Response Working Group.

The United States Capitol Building

The Arc Speaking Truth in Washington

/in , /by Pam Katz

Testifying Before Congress on Bridging Health Equity Gaps for People with Disabilities and Chronic Conditions

Today, as we approach year three of the COVID-19 crisis, The Arc testified before the Committee on Ways and Means, Subcommittee on Health, in the U.S. House of Representatives.

Bethany Lilly, The Arc’s Senior Director of Income Policy, represented people with intellectual and developmental disabilities, their families and friends, and the essential frontline disability service providers who support them; all of whom have directly experienced the barriers that people with disabilities face in accessing health care.

Below is a summary of Lilly’s remarks before the committee. You can access her full testimony here.

My name is Bethany Lilly and I am the Senior Director of Income Policy at The Arc of the United States. I am here today representing people with intellectual and developmental disabilities, their families and friends, and the essential frontline disability service providers who support them.

As a person with a disability, I want to acknowledge exactly how devastating the past two years of pandemic have been to my community. Millions of people with disabilities and our loved ones have lost their lives or faced two years of isolation and lockdown to protect ourselves. The frontline health care workers serving people with disabilities have faced the same risks and we mourn those we have lost, like Angie Reaves of Virginia.

My written testimony goes into detail about the common challenges and barriers that people with disabilities have accessing health care, the impact the pandemic has had on all of this, and how we can move forward to build a more equitable system. But to provide some highlights:

All people with disabilities need health insurance, but we currently have a very haphazard system of multiple private and public options that leaves many gaps: Medicaid, Medicare, the VA, the Indian Health service, employer-sponsored coverage, and Affordable Care Act to name a few. These gaps in access are concerning for everyone, but even more so for people with disabilities who often rely on health care to maintain their existing level of functioning and lives. In particular, the two-year waiting period for access to Medicare for Social Security Disability Insurance beneficiaries leaves people with very work-limiting disabilities without affordable health care. This is why we strongly support Chairman Doggett’s Stop The Wait Act. We also support efforts to close the Medicaid expansion coverage gap and improve the affordability of ACA subsidies.

Availability of particular services is also crucially important for people with disabilities. Many people with disabilities rely on home and community-based services (HCBS) not only to keep themselves healthy but to allow them to fully participate in their communities. Approximately 23% of all COVID deaths occurred in congregate settings that are the alternative to HCBS. So it is no surprise that both people with disabilities and older adults prefer those community settings. And this is why over 800,000 people across the United States are on waiting lists for HCBS. We desperately need comprehensive investment in HCBS so that people with disabilities can access the services they need. I know many Members of this Committee have co-sponsored the Better Care Better Jobs Act and I thank you all for supporting that investment in people with disabilities.

But access to HCBS isn’t enough–people with disabilities also need other comprehensive services. We need an out-of-pocket cap in Medicare Part D so beneficiaries aren’t on the hook for thousands of dollars in out-of-pocket costs for life-saving medication. Medicare needs to cover all basic health care services, including comprehensive dental, vision, and hearing benefits in Part B so that people with disabilities have access to these services.

And the health care system as a whole must acknowledge and treat people with disabilities as real people. During the past two years, our network had to repeatedly bring lawsuits or file complaints with HHS about crisis standards of care and hospital visitor policies discriminating against people with disabilities and their families. Unfortunately, this kind of discrimination is not new. Research makes it clear that many in the medical profession do not see people with disabilities having the same quality of life as people without disabilities and the health care systems reflect this.

The deep-seated bias against people with disabilities is all the more concerning knowing that COVID is a mass-disabling event. I know members of this Committee have done some work to address the needs of people experiencing Long COVID and other post-viral conditions like my fellow witness and I hope we see those investments soon. It is also crucial that we have data on people with disabilities, experiencing COVID and otherwise, that is collected with full stratification of reporting by key demographic groups.

Finally, about two other things on which the Committee has focused legislatively. First, I hope that investments the Committee has proposed to invest in medical students with disabilities are enacted soon–this is an effective way to begin to reverse bias and push back on the misconceptions about people with disabilities within the health care system. And second, I hope that we see action soon on telehealth–recent Data for Progress polling shows that 80% of all likely voters want the telehealth flexibilities created during the pandemic extended and many people with disabilities do too! We just need to ensure these options are available and accessible to all people with disabilities, just like they need to be for those in rural areas as well!

And that’s an important point about ensuring people with disabilities are included: If a policy works for people with disabilities, it will work for everyone. Working on solutions is how people with disabilities and organizations representing people with disabilities have responded to the pandemic–we have come together and explained our needs and asked to be included in the development of responsive policy.